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Congenital Heart Defect Awareness Week -- A Mother’s Journey

Previously, 14 year-old Jack shared on this blog how he lives with a congenital heart defect (CHD). The post below was written by his mother, Missy, about her experience caring for a child with CHD. Click here for more information about Congenital Heart Defect Awareness Week.

Our CHD journey began almost 15 years ago with the birth of our son, Jackson. We were thrown into the heart world unprepared and uneducated, as Jack was diagnosed with hypoplastic left heart syndrome when he was five days old. Never could we fathom the lifelong journey we were about to embark upon.

We were overwhelmed not only with the fact that our baby boy had a life-threatening heart condition, but also with equipment, monitors, tubes and lines. It is a life no parent should have to go through, but it had become our life. The hardest thing as a parent to accept was that they couldn't just “fix” him and he would be fine; he would have to deal with this his entire life. It is a helpless feeling as a mom— that there is nothing you can do other than love your child, be his mom and continually pray that he would survive.

I decided very early that I was going to treat him like any other child. So, regardless if I was certain that he could hear me, I was always in his room singing and reading to him. I thought if he could hear me or even smell me, he would know he was loved. Jack had his first open heart surgery when he was ten days old, and after about a month he was strong enough to come home.

One of the biggest challenges was bringing him home from the hospital and having to take on all of his care. Managing his feeding tube, pulse ox, weight, intake and output, on top of everyday care of an infant and a 22 month-old was a struggle. But somehow, you just do what needs to be done and get through it.

By age three, Jack was ready for his third open heart surgery. Knowing there was a chance I may never see him again, or he might not return to me the same child was terrifying. I remember smiling and waving to him, using everything in me to hold it together until he could no longer see me. While each surgery was a struggle for our little boy, he triumphed through each one and became stronger.

Other than daily medications and bi-annual cardiology visits, Jack lived a very normal life for the next 8 years. Most people were surprised to know he had CHD let alone a very complex, life-threatening one. While Jack was restricted physically (he couldn’t play contact sports), he excelled at school socially and academically.

Eleven years later our life again became a roller coaster. At a routine echo, we were told Jack’s heart was failing. He didn't really have any symptoms of heart failure, so once again this came as a complete shock to us all. The news was much harder to process, accept and adapt to this time because we had an eleven year-old who was very aware of what was going on. He asked us if he was going to die and also what percentage there was that he could die. It took everything in me not to sob to answer his questions.

Jack was admitted to the Cardiac Intensive Care Unit at Children’s Hospital of Wisconsin, and he was listed 1A on the transplant list. As I watched him growing weaker and simple daily tasks like walking, eating, or showering were becoming too much for him, I admitted to myself that maybe it wasn't God’s plan for him to make it through this. I would try to memorize his expressions, his smile, his hands, and the sound of his laugh—everything about him. Preparing myself that memories might be all I would have.

When it was determined Jack needed mechanical circulatory support as a bridge to transplant, the options were limited. At that time, the recently FDA approved Heartware VAD (HVAD) had not been studied in children with single ventricle disease. The surgery was a success. Jack was the first child in the USA to have the HVAD implanted and subsequently go home with the device.

Jack thrived being home and eventually went back to school (I had to attend with him because there wasn't anyone at school trained on his device). Three months after he was discharged from the hospital, we received a call that there was a heart for Jack. On May 20, 2013, Jack received his new heart and went home eleven days later.

Life in our home has returned to a new normal. There were so many times I just prayed he would stay alive; now I just want him to enjoy this normal time and just live. He stays active trying different sports which he was previously not allowed to participate in. He has also become an important voice in the CHD community, sharing his story at national cardiac conferences.

Being a CHD parent isn't always easy, but I guess life isn't supposed to be. It is living life with a chronic worry of what’s next. Being thankful we’ve made it three years post-transplant, also means we are that much closer to our next intervention. We’ve learned to never go to procedures without overnight bags packed and to always expect the unexpected.

It is knowing and caring about other heart families, and way too often attending funerals with tiny caskets. It is living with the uncertainty of what his life will hold… will this heart last until high school graduation? College? But this is our life and I’m blessed to have been chosen to be his mom. And even if I lost him at 3 or 11 years old, he has taught me so much and greatly enriched my life.

These CHD kids are wise beyond their years, and are some of the most amazing, strong, resilient, and brave souls I have ever met.